Been to see the neurologist today at the Walton Centre, Headache Clinic.
This is what we came up with! I have chronic migraines.
Some patients with chronic migraines present with other predominant complaints : - chronic fatigue, neck and/or back pain, generalised body pains, poor memory, forgetfulness, excess sensitivity to light and sound, irritable bowel symptoms, depression and irritability - yup, got all those!
Chronic migraine can start as acute, which gradually become worse over time.
One of the most common features of chronic migraine is that medication to treat acute attacks have stopped working and there has been an escalation to different or stronger meds. Yup, that's me too!
Certain factors may trigger a change from acute to chronic; it is most commonly the intake of painkillers and/or caffeine that keep it going, even small amounts.
Successful management of chronic migraine involves laying down a good foundation of lifestyle; in other words like any foundation, needs to be left in place long term.
* No painkillers/acute attack meds
* No caffeine
* Good hydration
* Regular meals
* Regular sleep
The best stategy in treating chronic migraines is to completely stop all painkillers and all caffeine as an abrupt withdrawal - cold turkey!
Once all painkillers and caffeine are stopped the headaches and other disturbances typically improves to some degree.
She has recommended a preventative med called Amitriptyline! When I said I was already on it, and have been for a year, she said it won't work effectively if there are still painkillers and caffeine still being taken.
She is going to up the dosage to 50mg, but only once the caffeine and painkillers have stopped, usually 2 weeks. There will be an increase in headaches but to bear with it!
The aim is to achieve 28 or more 'brilliantly crystal clear headache free' days per month.
If I'm taking painkillers for the Crohn's however, this will only amplify other types of pain. The mechanism for this amplification is called 'central sensitization' and is the reason why migraines may amplify other normal sensations and make them less tolerable.
For any arthritis pain, she recommended glucosamine.
So, during a migraine attack -
* Over hydrate, drink up to 3 pints of water straight away
* Use 4Head or other localised menthol strips
* Massage temples, neck and scalp
* Apply ice packs
* Rest

Hope this info helps other migraine sufferers, wish me luck in my 'detox'
I've just bought some de caff coffee and haven't had a painkiller since 8am, I'm in pain, but gotta see this thro, hope it woks!
xxxxxxxxxx

Wow, this is very interesting, I didn't realize migraines could go from acute to chronic like this! Good luck with everything, Joan! I get migraines too but not chronically, I got about one per month before I was on Amitriptyline myself. At 25 mg of Amitrip I don't seem to get any migraines (I don't do any caffeine myself either and only the ocassional acetaminophen/paracetamol for pain). My GI upped my Amitrip to 40 mg at one point, and my migraines came back! So I'm back at 25 mg and doing okay again, no further migraines. So, I hope upping your Amitrip dose to 50 mg helps instead of having the opposite effect like it did with me. Sounds like it's only for a short time though so that's good. Keep us posted on how you're doing and I hope things improve very soon!

Thanks Cat
It is interesting. I've been fuelling it by eating co-codamol and drinking coffee! DUH!
The other interesting thing is it's always this time of year, heat, humidity and sun. But of course during this heat I've not been drinking enough water neither.
she reckons the Amitriptyline at 50mg will be in the short term only just to kick start it again, then lower it back to 25mg to maintain remission.
And, taking sumatriptan nasal spray would be ok but only on special occasions such as an exam, a wedding, a long plane journey etc, she doesn't advocate triptans, thay still fuel the migraine, so only maybe 4 times a year in emergencies.
She's writing to my GP to discuss introducing a second preventative, something like a SSRI or anti seizure med like epilim. Scary that!
I've not had any co-codamol for nearly 8 hours now
fingers crossed
xxx

good luck migraines are rotton and stopping caffine will be hard but it's def a trigger for headaches. I know anti epileptic drugs eg lyrica are used quite often for nervy pain like sciatica etc with good effect so I wonder if epilim has the same effect, also the glucosomine meds are good but get them with added chondriton if your allowed to take it as it's good for arthritis I also think some people are entitled to this as a prescription. Have you tried acupuncture? Hope your detox does the trick x

I have tried acupuncture, my old GP used to do it for free but I moved out of his area.
I don't know whether it worked, it was a long time ago.
When I think about it now, I've had headache for 20 years! Always thought it was my neck.
But this doc today said if that was the case, my neck would hurt all the time, which it doesn't, only when I get these migraines.
Thanks for the heads up on the meds, off to do some research even tho she said 'keep off the net'
xxx

it's impossible to stay off the net i'm the worst for it, make sure though your not bending your head forward on a lap top as this can aggravate neck pain and headaches. As a physio I treat cervical headaches quite a lot which can be really effective but they tend to present as one sided and coincide with muscular tension in the upper back and neck with trigger spots I also would use a lot of massage, mobilisations and acupuncture. There are so many causes of headaches so it's a bit of trial and error what works for one mighn't work for the next person... a bit like crohns!!! good luck anyway oh and my only other bit of advice is try not to were high heels or hard shoes when walking on hard ground as your spine takes a lot of the pressure which can worsen the neck pain and headaches.

Have you any arthritis in your neck? if it's stiff the blood vessels / arteries become a little restricted affecting the blood supply to the brain which in turn can cause headaches thats why massage and mobilsation can be effective. Def worth a massage from hubby !!! also bending forward a lot from the neck can cause the discs to bulge a little so watch the posture... i'll stop talking now I could write an essay on it and bore you all to tears!!

Archie, please tell me more hun, bore me please!
Arthur was mentioned years ago, dunno if I have it or not, just general wear n tear for my age I guess!
I've had physio on it and I'm still doing my exercises that were shown to me.
It really helps when I shove and tuck my chin in!
xxx

Ah yeah, my hubby is on Epilim Chrono as an anti-seizure med, but still got almost daily migraines. His research, and that of his neurologist, is that Amitriptyline, Epilim, tri-cyclic AD's dont work. What you want is Topiramate. And yes, absolutely no analgesics like paracetamol/codeine/ibuprofen or triptans. Caffeine is okay, as is chocolate - correlation does not equal causation!

The neuro's comment was that no-one gets daily migraines. What he, and probably you, are getting is Medication Overuse Headache or Analgesic rebound headache, etc. After Paul got up to full dose on the Topiramate and visited the neuro again we were told not to allow him any analgesics, at least for a couple of years. Cold turkey! That was a few months ago now and (touches large piece of wood) he's just gone 3.5 weeks without a migraine or other headache.

So, if the Amatriptyline doesn't work ask about Topiramate. Sadly the initial side effects mean quite a few people drop out, things like tingling fingers, hands , toes, and leg even in Paul's case, but they do subside after a while. So stick with it.

Thanks Beth
that's good info to know!
She mentioned introducing a second preventative, called an anticonvulsant and mentioned Epilim Chrono and Topiramate.
Of course all this went right over my head, then I read it in the literature that she gave me.
Firstly, gotta stop the painkillers, like Paul did, cos it's Analgesic Rebound, defo!
xxx

Good luck with the cold turkey...hopefully you won't need any extra meds. Apparently you only need 6 paracetamol for a few weeks to develop analgesia headache...yuck. But the triptans for migraine are the biggest culprits...migraine sufferers often end up between the devil and the deep blue sea due to it.
Heres hoping you are soon a new woman.

when i was little i was on a migraine diet, not being allowed to eat chocolate as part of a diet turned me off to all diets. But it did help.
Good luck! I hope giving up all those good things really help.

now there not so bad. i take Maxalt-MLT which melts away (so if your nauseous you can take it). because of all my meds i couldn't take Tylenol or Excedrin.

Had such a horrendous day today, and last night!
Head pain includes, behind ear, eye, temple and base of skull, scalp pain,and neck pain. Feel really nauseous and ended up sleeping on and off all day. An ice pack really helps.
It's been 36 hours now since my last co codamol and coffee.
I'll know what to do next time I have a migraine, NO BLOODY CO-CODAMOL!
I wouldn't mind but it's only 8mg, I've been on 30mg with Crohn's flare up in the past.
I've been researching Analgesic headaches, I really didn't know I was feeding it, the brain needs to switch migraine off on it's own!

I quit Remicade because I developed migraines while taking it. Now I'm on Humira and have been since 2007. I have lung disease, secondary to Crohn's, and the Humira keeps inflammation down in the lungs as well as the gut. I'm going to take it for as long as I can. BUT I still would live in migraine land if I'm not extremely careful, as you're finding out you need to be.

This book Heal Your Headache the 1,2,3 Program for Taking Charge of Your Pain by David Buchholz MD of the John Hopkins University School of Medicine echoes much of what you've shared from your neuro doc.

This book has a fantastic list of possible triggers and explains threshold/triggers. I can continue taking Humira because of this book. I hope it'll help you, too.

I'm also taking Norvasc, a calcium channel blocker, and gabapentin, an anti-seizure med for migrain preventions. I began gabapentin when I was taking Remicade in about 2000. I cannot wean off that drug no matter how I try. If I drop my dosage, I have horrendous migraine. So I think I'm stuck on it since I'm unwilling to tolerate not using it. I'm sharing that as a caution to anyone who is offered it for migraine prevention.

I also have Maxalt as a rescue med. Honestly? If I can avoid triggers and have regular sleep and not too much time in front of a computer screen or television, and keep the curtains closed to eliminate sharp contrast of light and dark, and avoid loud noises, I live in a fairly happy land of mild headache and no migraine.

I'm certain that if I quit Humira, I would not have this migraine brain. The biologics are not friends to my brain. But Humira's been a miracle for my overall health.

Good luck, Astra. Thanks for sharing all that you're learning. There must be a lot of us out there with Humira Headaches.

I feel a lot better today, woke up bright eyed and bushy tailed for the first time in weeks!
I've been cleaning and stripped my bed for the wash.
I've not been able to function for ages. My triggers are bright sunlight and heat. I quite literally melt in the heat. The computer and telly does make it worse, yeah.
That sounds like a good book, I'll order it off Amazon later, thanks.
I'm a bit apprehensive about going on any more meds for migraines, I'm hoping by staying off painkillers and just taking the Amitriptyline will ward off any more. Next attack that I get I will just lie down in a dark room with some ice packs and sweets!
Like littlemiss pointed out, between the devil and the deep blue sea!
I was refused Humira last year, doc said I wasn't ill enough for it, but the Crohn's is doing ok now, under control with Entocort.
Hope your feeling much better now with Humira raindrop, stay well
xxx

It's day 12 of my detox.
I've had a few rough days, but I no longer have migraine!
I haven't had any painkillers at all, I have had a sneaky coffee tho!
I have munched on sweets like Beth advised!
My teeth are like a row of bombed houses tho, ha ha
Massage, ice packs and 4Head are the way to go!

Got a letter from the neurologist which was forwarded to GP too.
Her recommendations - to introduce a preventative med for 6 months, either
* Propranolol
* Pizotifen
* Pregabalin
and of course, to up the Amitriptyline

I have an appt with GP on Thursday to discuss these options, and will ask about the Topiramate that Beth recommended.
I'm not sure whether I want any more meds tho!

I want you all to know that I'm so proud of myself for coming off painkillers, and if I can do it, anyone can, I was such a co-codamol junkie!
lotsa luv n stuff
Joan xxx

It's day 12 of my detox.
I've had a few rough days, but I no longer have migraine!
I haven't had any painkillers at all, I have had a sneaky coffee tho!
I have munched on sweets like Beth advised!
My teeth are like a row of bombed houses tho, ha ha
Massage, ice packs and 4Head are the way to go!

Got a letter from the neurologist which was forwarded to GP too.
Her recommendations - to introduce a preventative med for 6 months, either
* Propranolol
* Pizotifen
* Pregabalin
and of course, to up the Amitriptyline

I have an appt with GP on Thursday to discuss these options, and will ask about the Topiramate that Beth recommended.
I'm not sure whether I want any more meds tho!

I want you all to know that I'm so proud of myself for coming off painkillers, and if I can do it, anyone can, I was such a co-codamol junkie!
lotsa luv n stuff
Joan xxx

Hey Joanie, I know that taking painkillers can creep up on us slowly to become addicted or get worse side effects. I only take them when necessary. Besides both my docs harp on me about blood work so they can see what I am taking. Gp wont give me pain meds, only the Gi. I know so many that are reliant on them and they have migrains too but you can't tell them to lay off. Drink lots of water to flush everything out. Most of us have D and need to replace the water, and most wait til they are thirsty. I am a creature of habits too. Glad you are doing so much better, now seeing Marky could get rid of those headaches.

Tip toe, tip toe, tip toe....Is it safe to come in yet??
Here's hoping you had a fantastic pain free weekend!!! I am a caffeinaholic, the thought of giving it up cold turkey, shudder. My hats off to you for continuing to do so well Joan.

__________________Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg

Day 14 of detox.
Been to see my GP to discuss neurologist's recommendations.
He said he'd been thinking about it all day and come to the conclusion that he doesn't think powerful preventatives like Propranolol is the way to go.
He said he was very pleased how I had come off the co-codamol and wished all his patients had the strong will and determination.
He said that he wants me to monitor the headaches over the next 3 months and then we'll decide if there has been a drastic improvement overall. The aim is 28 'brilliantly crystal clear headache free' days per month.
Like Beth said, I have to have the migraines that are not due to painkiller overuse to consider a preventative.
He said he's leaving the Amitriptyline at 25mg for now.
He said I was looking good and happy!
So yeah, I'm happy!
xxx